What is quality care and quality indicators?

We all want to get the best care we can when we need it. But how do we know if we are getting the best quality of care? There are lots of way to define and measure quality of health care. Regulators and insurance companies may define quality care by what is done when you are seen by a doctor or go to a hospital. Others may look at the cost of care. Looking at a person's satisfaction with their care is also an important part of quality care. Patient satisfaction varies from one person to another and may be affected by what medical problems a person has and the type of care they need.

People with epilepsy and their families are faced with another issue. They may not have access to the type of care they need. Efforts have been underway to better understand quality care in epilepsy as well as find ways to improve care that is given. A research project funded by the Centers for Disease Control and published in the journal Neurology in 2007 identified some quality measures for epilepsy.

Since many people with seizures are not seen by epilepsy specialists, the researchers developed quality indicators that focused on care for people with epilepsy in primary care and general neurology clinics.

The researchers reviewed exisiting clinical guidelines and the medical literature to develop a list of items that were considered important for quality care.

Other items were added from results of patient focus groups and a panel of experts.

These items were rated by the expert panel and resulted in a list of indicators of quality epilepsy care.

This project has led to more work in evaluating quality care in epilepsy. Health care professionals are now being asked to document the care they provide to people with epilepsy using some quality indicators. Quality care measures will also play a role in how care is paid for.

How can people with epilepsy and their families use this information?

We (writers for www.epilepsy.com) feel that the quality indicators from the study noted above can help people with epilepsy (and their families) by knowing...

What they should expect from their primary care and neurology doctors and nurses.

Examples of good care from epilepsy specialists.

That these (or other examples of quality care) could help researchers and health care administrators evaluate the services that people are given.

How they can be used to get the care they need.

How can these be used?

The information from this study on quality indicators was developed into checklists. These checklists can be used by people with seizures, their families or care providers for many reasons, for example to:

Know what questions to ask their health care team

Know what services or help they should get

Know when to ask certain questions

Know what role they have in their epilepsy care.

These are not the only way you, or anyone else, will measure your epilepsy care. But we hope these will help you get the care you need alone your epilepsy journey.

When first diagnosed

After the diagnosis

If seizures don’t stop

If medications cause side effects

Questions for the doctor

Just for Women

What else should I know about epilepsy care?

Epilepsy can be pretty complicated when seizures aren't controlled by medications or are difficult to diagnose. People may need more advanced care if they are very young, older, women, have seizures and other medical problems, or have seizures that are interfering with their quality of life and daily living. Look at the following pages for more help with seizures and when to consider specialized epilepsy care.